“But you don’t look sick.” That’s probably one of the biggest hurdles I face living with Multiple Sclerosis. I’m one of the truly lucky ones whose progression is so minute it’s not very noticeable at all. Physically, I’m doing alright. But there are many hidden complications and issues that I deal with on a daily basis. Complications and issues that most people tend to label as inattentiveness or indifference or …. But I’m not indifferent or inattentive. At least I don’t mean to be.
Recently, the MS forum I belong to on Facebook linked up an article from the UCSF Multiple Sclerosis Center. You can read the entire article here, but I thought I’d highlight the information as it pertains to me. For instance, the UCSF MS Center claims that “45 – 65% of people living with MS experience problems with memory, attention, word-finding, problem-solving, or other cognitive functions as a symptom of the disease.” Um. Yeah. That’s me. I can be told something only to forget it a second later. If it’s not written down (and it works better for me to write it down), then more than likely I’ll forget it. And as far as attention, I’d say I’m hyper-attentive. I get so focused on what I’m doing that everything and everyone else is non-existent. I can only do one thing at a time and when I’m interrupted, well forget it. Because more than likely, I’ll forget what it was I was focused on. And then there’s word-finding. I find more and more that I can’t remember simple names or terms for things. My mind just shuts off or my lips can’t form the word I can kind of grasp in my memory. For someone who loves words, this is hard to deal with. I wasn’t an English major for nothing, but now my love of words fails me consistently.
The article also claims that “Cognitive difficulties can be particularly distressing for people because they are changes that nobody sees. Sometimes family, loved ones, or employers will believe that a persons forgetfulness or lack of attention are willful ignoring, rather than a symptom of the MS.” Yes, it’s frustrating. I understand that. It’s frustrating for me, too, to realize that my cognitive abilities just aren’t there. I can’t even have a decent fight with anyone because I’ll have feelings about an issue and know there’s something to those feelings, but I can hardly ever back it up with straight hard facts. Because I JUST DON’T KNOW! I don’t remember or I can’t find the right words. So, of course it comes across like I’m making stuff up. And then resentment kicks in for both parties.
There’s a lot more in the article about these cognitive difficulties, but I’m going to refrain from going through it. I’ve given a lot of insight into what my life is like right now, but suffice it to say, that if you thoroughly read the article, you’ll have a better understanding of what I live with every day. And if you want to know what you might be able to do to help me deal with it all, well, that’s in the article, too. Because even though I’m physically stronger than a lot of people with MS, I do live with the disease and have some very real symptoms.
I’ll get off my soapbox now.
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